so worried

[Tamistwins]

I don't know where to turn anymore or what to do. I feel so helpless. I thought having this pandas diagnosis would get my son better but now everything is all back and worse, new things started to develop. My son has a history of many positive strep cultures starting before 2. Who knows how many times it went undetected because he didn't have typical symptoms. At first I suspected ocd, then he had some vocal humming and that led me to a neurologist last year when he began banging his head on hard objects. Turns out he had a tough strep infection to get rid of, after 10 days on antibiotic he tested negative on rapid but positive at the lab. At that point treated with cleocin. I found a pandas specialist and he wad treated long term antibiotic. We were fighting mycoplasma too and then mono. Eventually head banging got better his ocd was controlled to a point, but then again this year seemed like was getting bad again, extreme odd and repetitive phrases. He had 2 rounds of ivig and I know there are many positive stories but his is not one of them. After his second time which was in October, he got progressively worse. Everything that was gone due to being on abtibiotics is back. He began banging his head again, it is unbearable to watch. He is hyper, needs his compulsions met by me, will interrupt, be nasty demanding and scream ease piercing screams if they are not met. He doesn't rest for a moment always talking....ok....ok....ok drives me nuts because he needs me to say it just right. The newest thing he does is to bite on hard objects, or tap his teeth on it. Not only is he picking up germs into his already compromised immune system; he might knock out his tooth. We are back to square one and worse off. We just started him on an ocd medication tonight because it takes up his whole day, impossible to live like this. He keeps walking up saying he doesn't feel well and his throat hurts. He was just taken off zithro for 10 days to take cipro in case he still has mycoplasma. I am at a loss of what to do, his head banging getting worse and he taps and touches everything.

So scared for him. Any advice?

[peglem]

For my daughter the head banging is almost always a sign of dental and/or sinus problems. Ugh, this is one disorder where misery does not love company. So, sorry to hear about this. Headbanging is the worst!

[kimballot]

I am so sorry that he is not doing well. I am wondering if he has an underlying infection that has not been cleared. Is he currently on antibiotcs? and ... has he been tested for lyme?

[Megs_Mom]

I am not a lyme mom, but when I read about a child with so much pain, and who worsens on IVIG, I cannot help but wonder about Lyme. I don't really understand how IVIG works, and why some kids with Lyme seem to get worse but I think it should be ruled out first. I have a dh with Lyme, and just like PANDAS, I have been amazed at how hard it is to understand, how much research there is, but how few docs understand it. I am also amazed at how much pain it causes, and how varied it can be.

 

hmmm, 2 "rare" diagnosis' in our family....

 

Hope it is feeling better soon, the headbanging must be heartbreaking. Thinking of you often.

[PhillyPA]

what was the dosage of the ivig?

[Tamistwins]

what was the dosage of the ivig?

considered the high dose ivig i had asked about it but can't recall the numbers right now with everything else on my head.

[T_Mom]

I am so sorry you are going through this-- Is he on antibiotics now?

We have had a couple of real set backs in our house and now trying to "regain" our equilibrium (not easy.)

 

We finally decided to switch my oldest d back to the antibiotic which helped her for over a year, amoxicillan, and finally things are seemingly calming down some-- If he is not on antibiotics now, would it be worth a try to go back to the one that seemed to help? I realize that for some there seems to be a help when "switching up", but in our case my d did not show improvement on Augmentin or Azithro, but did once we went back to Amox.

We have found this to be helpful--when sliding down the slope again.

[butterflymom]

=

Edited February 2, 2016 by tampicc

[Tamistwins]

For my daughter the head banging is almost always a sign of dental and/or sinus problems. Ugh, this is one disorder where misery does not love company. So, sorry to hear about this. Headbanging is the worst!

Thank you Peggy, what a horrible night I had, he kept waking up complaining not feeling well. He walks so loud and then in bathroom hearing boom boom boom , his head, this is a nightmare!

[Tamistwins]

I am so sorry that he is not doing well. I am wondering if he has an underlying infection that has not been cleared. Is he currently on antibiotcs? and ... has he been tested for lyme?

We think we are still fighting mycoplasma, strep has been under control because he has been on antibiotic for a very long time. We tried biaxin, augmentin , omnicef, zithromax, right now we switched from zithro to cipro. I don't know what else to do. Just started ocd meds

[Tamistwins]

Thank you, we did western blot but will do another testing end of November. This really is heartbreaking and difficult to hear other people going through it as well. I pray to have a positive post.

I am not a lyme mom, but when I read about a child with so much pain, and who worsens on IVIG, I cannot help but wonder about Lyme. I don't really understand how IVIG works, and why some kids with Lyme seem to get worse but I think it should be ruled out first. I have a dh with Lyme, and just like PANDAS, I have been amazed at how hard it is to understand, how much research there is, but how few docs understand it. I am also amazed at how much pain it causes, and how varied it can be.

 

hmmm, 2 "rare" diagnosis' in our family....

 

Hope it is feeling better soon, the headbanging must be heartbreaking. Thinking of you often.

[Tamistwins]

I am so sorry you are going through this-- Is he on antibiotics now?

We have had a couple of real set backs in our house and now trying to "regain" our equilibrium (not easy.)

 

We finally decided to switch my oldest d back to the antibiotic which helped her for over a year, amoxicillan, and finally things are seemingly calming down some-- If he is not on antibiotics now, would it be worth a try to go back to the one that seemed to help? I realize that for some there seems to be a help when "switching up", but in our case my d did not show improvement on Augmentin or Azithro, but did once we went back to Amox.

We have found this to be helpful--when sliding down the slope again.

I don't actually know anymore what actually helped. He was on clonodine when he banged his head last year and then was weened off. You can rsad my other response I listed different antibiotics he took. He was never completely helped but now that head banging and ocd is worse I see how much better he was. I'm sorry for your difficult time as well, praying for all of us.

[Tamistwins]

Have you tried a course of steroids to settle things down? I think that is not supposed to be good for Lyme, but it usually helps PANDAS.

He is on 3 weeks of steroids now, no improvement. I just didn't get positive for lyme and antibiotics he's been on fight lyme too.

[sf_mom]

In order to treat Lyme you need to be on multiple antibiotics to go at the inner/outer structure of the cell wall. You are NOT effectively treating Lyme based on the antibiotics outlined in your post.

 

I also believe you are having a negative effect from the steroids because there is an underlying chronic infection of 'something'. His negative response to IVIG also mirrors many who's children are highly co-infected... Just read the following post http://www.latitudes.org/forums/index.php?showtopic=10949

 

All three of my children have congenital Lyme Disease. Two of our 3 children originally tested for LD were negative via Igenex due to the fact that is congenital. We did not unravel LD until we did DNA and co-infection testing.

 

I highly recommend you see an LLMD to investigate all potential chronic infections or causes to your son's issues inclusive of: mycoplasma, bartonella, babesia, ehrlichiosis, RMSF, strep, viruses, molds, additional parasites, allergens, toxins, etc.

 

I know its hard to switch gears when you've invested so much in the PANDAS diagnoses but others are now having great success when finally unraveling how their children are suffering from multiple chronic infections.

[Tamistwins]

Thank you for your recommendations. Dr. B sending out script for igenex testings. Presently my son is taking 2 antibiotics, zithro and cipro.